Adjusting to life with both a colostomy and a urostomy after rectal cancer surgery can be quite challenging. The person sharing their experience is just five weeks out from a major surgery that involved the removal of their rectum, prostate, and bladder. They now have both a colostomy and a urostomy, and are dealing with ongoing pain, significant weight loss, and frequent appliance leaks. These issues have made it difficult for them to imagine returning to normal activities like exercise, travel, work, and socializing. The large urostomy pouch is particularly hard to conceal, affecting their self-confidence. Although they are relieved that the cancer margins are clear, they are worried about whether they can ever return to a normal life.
Here are some pieces of advice and insights that might help:
1. Recovery Timeline & Mind-set
- It's important to remember that five weeks is still very early in the recovery process. Pain and setbacks are normal after such a major surgery.
- Physical healing can take months, and some people need a year or more to fully adjust.
- It's okay to grieve the loss of your old body and lifestyle. Professional counseling or joining local ostomy support groups can be beneficial.
2. Practical Appliance Tips
- Frequent leaks might be resolved by using a convex flange or trying a different wafer shape. Consulting an ostomy nurse can be helpful.
- A hernia support belt can prevent parastomal hernias during the healing process.
- Trying different products from manufacturers is common, as skin types vary.
3. Colostomy Irrigation
- If any part of the descending colon remains, irrigation might help eliminate routine stool output, allowing you to focus on managing the urostomy.
- This should only be considered once the stoma is fully healed, and you should verify your candidacy with a surgeon or WOC nurse.
4. Urostomy-Specific Routine
- To reduce leaks and prevent UTIs, some people change the wafer every three days, the bag daily, use a night drain, and flush the pouch once a day.
- Staying hydrated is crucial since there is no bladder reservoir. Keep an eye on urine color, clarity, and odor, and consider keeping a hydration journal.
- Supplements like cranberry extract and D-Mannose have helped some people reduce recurrent UTIs.
5. Diet & Blockage Prevention
- It's advisable to avoid high-risk foods like olives and raw onions until you understand your body's patterns.
6. Emotional & Peer Support Resources
- Organizations like FightCRC.org and the Colon Cancer Alliance offer education and survivor networks.
- Online communities can be a safe space to ask questions, vent, or express anger without judgment, which is an important part of healing.
7. Reassurance
- Many people with dual ostomies lead full, active lives, including working, parenting, traveling, cycling, and enjoying beach outings and pool parties. They are just "plumbed differently."
- Although setbacks can feel overwhelming now, addressing issues like skin problems, flange types, and routine adjustments can gradually restore confidence and independence.
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